More than five million Americans suffer from Dementia. My mom was one of them. A site for young adult caregivers struggling and coping with "the long goodbye." Created in 2007. Ended in 2014. Stay tuned for my new project about life after dementia, called "The Recovering Caregiver."

She forgot My Name

That’s it. She forgot my name. She knows who I am, which is more important… still, it was still an incredibly surreal moment… just watching her struggle for that name. Searching and digging her memory banks for “KATHY.” This is new. She knew my name. Suppose it’s indicative of just how far she’s progressed. I wasn’t sad about it. I just told her my name and smiled. It’s no big deal. Don’t worry. I forget lots of stuff too mom.

To my dad, I became “The Boss”…since there were so many things that I was in charge of. But you nailed it when you said that she knows WHO you are. The brain just shuts those “name” drawers and they are all rattling around inside but can’t get opened when needed. This is the start of a different chapter. You are incredible and I really really really love your honesty.

Isn’t extraordinary what we learn to be grateful for, how we rationalize our relationship to this disease? At time my father thinks I’m his mother, other times he knows I’m his ‘lil’ honey’, but i haven’t heard him say my name in quite some time. I remember once thinking, ‘if my parents forget me, do i cease to exist?’ and after banishing what feels like a completely illogical thought, i rationalized that what was important was that he remembered that i was someone to him.

But really i am someone, with or without him. It’s just that no matter how much you know, you never expect the moment when you pass that milestone of ‘without him’.